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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6441729 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7150 on: 28/03/2010 19:14:16 »

omerbasket, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: 3 years' worth of posts (over 7,000 posts!) from 150+ Forum members, and an additional 150 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
demografx POIS site:http://thenakedscientists.com/

and 1,000+ results came up for "demografx" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7151 on: 28/03/2010 19:18:15 »

Something else that could be a productive exercise, if we would all test our minerals (at least magnesium, zinc, calcium, copper, selenium) and report the result as a percentile, as I did above. Suppose that we all happen to be above 70% for copper, or below 30% for zinc, or for magnesium, then we could gain a lot of informations. As I wrote above, Adding ZMA or some mineral to your diet for a month or two and not noticing results doesnt mean much. It can be bound to phytates if you eat lots of nuts or grains, or it could not be so well absorbed. For example on top of this page someone talks about dairy intolerance, lots of people have subclinical lactose intolerance, which cause some inflammation in the bowel but they never know. thats one way not to absorb minerals. there are many others of course

It's very reasonable to me that our body could go into a much deeper refractory period as an evolutionary mechanism to avoid depletion of something. It could be avoiding depletion of the precursors of a neurotransmetter or an hormone that is produced heavily during sexual encounters, or some ingredients of sperm, or a combination. 


Looking_for, thank you! Who would we go to for mineral testing?
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7152 on: 28/03/2010 20:25:27 »
If we have any hope to fix this is by stepping up our game to the next level. One experiment could be if several of us would do a full hormonal, cortisol, neurotransmetters test at some point, then have a few orgasms during the next 24h and then come back for another round of the same tests. Maybe also a third round of testing 2-4 days later. We could then compare with what is predicted in the litterature and see where we overreact. I know this would be expansive, but if your insurance wont pay for it i think there are pretty good test available online (for example the life extension foundation).

Neurotransmetters are hard to test, but if we each understand better the effects of serotonin, dopamine, acetylcholine, GABA, etc just by writing down how we feel for the next hours and days after orgasms, we can probably deduce a lot about how they behave.

If anyone has tried or wants to try a prolactin inhibitor like the ones I suggested, and after a few weeks of abstinence try an orgasm or two to see if the response is different. But even if that was highly successful I wouldnot ignore pregnenolone.

I could be up for both of these... obviously not both at a time, but wouldn't have a clues as to how to enterpret the tests! You could help right?

There are a couple of good urologists in Chile and likewise labs. It may be expensive, but what other way is there?

For the first test it would be best just before the orgasm, and I suppose best after a good week or two of abstention? Then the second the day after and third 2-4 days later?
 

Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7153 on: 28/03/2010 20:44:25 »

Something else that could be a productive exercise, if we would all test our minerals (at least magnesium, zinc, calcium, copper, selenium) and report the result as a percentile, as I did above. Suppose that we all happen to be above 70% for copper, or below 30% for zinc, or for magnesium, then we could gain a lot of informations. As I wrote above, Adding ZMA or some mineral to your diet for a month or two and not noticing results doesnt mean much. It can be bound to phytates if you eat lots of nuts or grains, or it could not be so well absorbed. For example on top of this page someone talks about dairy intolerance, lots of people have subclinical lactose intolerance, which cause some inflammation in the bowel but they never know. thats one way not to absorb minerals. there are many others of course

It's very reasonable to me that our body could go into a much deeper refractory period as an evolutionary mechanism to avoid depletion of something. It could be avoiding depletion of the precursors of a neurotransmetter or an hormone that is produced heavily during sexual encounters, or some ingredients of sperm, or a combination. 


Looking_for, thank you! Who would we go to for mineral testing?
I did mine with the lab Quest Diagnostics but I read Spectracells Lab might be better for minerals. If you just want plasma levels I think this is fairly standard in any lab. RBC levels probably also not a big difference. I think some more sophisticated labs use loading methods or other dynamic testing. For example you load magnesium one morning and collect urine for 24h. that tells you how much your body wants it. I have only try a loading test for iodine so far.

Btw labs wont give you the percentile. For those whose math ir rusty, you let mu = (lower bound of the normal range + upper bound of normal range)/2. Then sigma = (upper bound - lower bound )/4. Then let z= (your personal concentration - mu) / sigma. This is your z-score. You can find the probability P(Z<z) in any normal distribution table. Be careful with signs, with a z<0 you have to do a little "reflection" to get the probability from the table.

This of course assumes that the concentration are normally distributed. For something like TSH (the thyroid stimulating hormone) you would probably expect a fat tailed on the right, not normally distributed. But for minerals i think this is a good assumption.
 

Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7154 on: 28/03/2010 20:51:38 »
If we have any hope to fix this is by stepping up our game to the next level. One experiment could be if several of us would do a full hormonal, cortisol, neurotransmetters test at some point, then have a few orgasms during the next 24h and then come back for another round of the same tests. Maybe also a third round of testing 2-4 days later. We could then compare with what is predicted in the litterature and see where we overreact. I know this would be expansive, but if your insurance wont pay for it i think there are pretty good test available online (for example the life extension foundation).

Neurotransmetters are hard to test, but if we each understand better the effects of serotonin, dopamine, acetylcholine, GABA, etc just by writing down how we feel for the next hours and days after orgasms, we can probably deduce a lot about how they behave.

If anyone has tried or wants to try a prolactin inhibitor like the ones I suggested, and after a few weeks of abstinence try an orgasm or two to see if the response is different. But even if that was highly successful I wouldnot ignore pregnenolone.

I could be up for both of these... obviously not both at a time, but wouldn't have a clues as to how to enterpret the tests! You could help right?

There are a couple of good urologists in Chile and likewise labs. It may be expensive, but what other way is there?

For the first test it would be best just before the orgasm, and I suppose best after a good week or two of abstention? Then the second the day after and third 2-4 days later?

hola senor,

yes i think that would be a good plan. say 2 weeks of abstinence, then first test, then few orgasm, then 2nd test as soon as possible after. then 3rd 2-4 days. If we were part of an official study they would probably make us masturbate and take blood samples every 10 minutes to see the precise response that we have to orgasms, to compare it others in the population. But that probably wont happen. But these 3 test plus writing down your observation about your mental status (euphoric, down, clever, confused, tired, etc) should give a lot of info. For example if many others have a pregnenolone that plummets to almost zero, like it happened to me, then we could start thinking about at least why this happens or how we can fix it.
 

Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7155 on: 29/03/2010 02:16:33 »
Im sure there's lots that would study orgasms of pois sufferer

this guy currently (dec 09) is doing something with orgasms for example http://psychology.rutgers.edu/~brk/
http://www.dintz.com/scientists-study-mental-orgasms-through-mris/
« Last Edit: 29/03/2010 02:36:13 by daveyboy »
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7156 on: 29/03/2010 04:17:09 »

goingcrazy, congrats on the 5 weeks!

That's really longtime for you isn't it?

Yes thank you it was my longest so far.

Right now, day 2, I am Perfect...No bad mood and no brain fog.  The only thing I have changed was not touch my man part all day, and I slept in a different room last night.  I also ate sugar, french vanilla tea and experience no sensitivities.

I noticed that when I am POIS, I am unusually mad at everything and take everything personally.

I also agree about this hormone/prolactin/dopamine issue.  In the center of my head after "O", I notice a terrible feeling that comes on.  This is eventually relieved by spurts of "good feeling" chemicals that eventually balance the mood chemicals in my head. This all takes place over about a day for me. 
« Last Edit: 29/03/2010 04:21:46 by goingcrazy »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7157 on: 29/03/2010 04:42:22 »

Im sure there's lots that would study orgasms of pois sufferer


Sure, there are many. But they need funding.


this guy currently (dec 09) is doing something with orgasms for example
http://psychology.rutgers.edu/~brk/

http://www.dintz.com/scientists-study-mental-orgasms-through-mris/


I'll write to him and ask.

In 2009, I wrote to Beyer-Flores, his co-author of "Science of Orgasm" (no reply).

Nice find, daveyboy! (I just saw in your 2nd link above: "Dr. Komisaruk has just been offered a grant to study the male orgasm." Wow! Too good to be true. Now let us all scientifically...............cross our fingers :)
« Last Edit: 29/03/2010 05:16:36 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7158 on: 29/03/2010 05:02:17 »
Here's the email I sent just now, largely authored by Counterpoints and with assistance from Martin88:

Subject: Seeking help through research for a serious orgasmic-medical condition

In a message dated 3/28/2010 8:56:55 P.M. Pacific Daylight Time, [demografx] writes:

Dear Dr. Komisaruk,

                    Re: Postorgasmic Illness Syndrome (POIS)

We are asking for your precious help concerning a serious new medical condition (described below). The smallest suggestion, idea, opinion or ideally a proposition from you to initiate some research, would be very welcome and appreciated. We already have a group of sufferers who would be willing to participate in a study.

The first cases were officially described in 2002, by Dr. Marcel Waldinger (MD PhD) and endocrinologist Dr. Dave Schweitzer, MD.(http://www.ncbi.nlm.nih.gov/pubmed/11995603).  He referred to the condition as "Postorgasmic Illness Syndrome" (POIS). His study is attached.

Essentially, those with POIS usually suffer debilitating symptoms that follow within minutes of orgasm, and last for many days. The symptoms include severe fatigue/exhaustion, anxiety, severe cognitive impairment, word finding difficulty, and irritability, but there are also other notable symptoms.   Some with this condition have reported increased cortisol levels (e.g. over 200% of the upper reference for 24 hr urine cortisol).  Others have increased prolactin (over 400% of the upper reference), increased ACTH, or decreased testosterone.  Pituitary abnormalities have been found in those who have had pituitary MRI scans.  One sufferer was found to have adrenocortical carcinoma.  Over 97% of the reported cases have been from men.

Quite alarmingly, the number of reported cases is increasing at a rapidly increasing rate.  Presently, about 300 cases can be found directly (or are linked) on a UK Science forum, "The Naked Scientists", which is administrated by a Cambridge medic.  Other cases are being increasingly described by the ISSM (International Society for Sexual Medicine).

Please consider this carefully.  A helpful response could save many lives.  If you have any questions, or need more information, please ask.  Several prominent scientists with reputable university affiliations feel that this condition is in urgent need of research attention.


Best regards,
"demografx"
Moderator
POIS Forum  (representing 300 POIS cases reported, and over 600,000 + page views (visitors)
http://www.thenakedscientists.com/forum/index.php?topic=6576.0

POIS website:
http://sites.google.com/site/POISwebsite/

attached: Dr Waldinger's 2002 Research Study PDF

(Also sent a 2nd email to Dr Komisaruk, with our wikipedia entry and my cellphone number, plus all the resources from our newcomer-Welcome letter).
« Last Edit: 29/03/2010 05:33:03 by demografx »
 

Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7159 on: 29/03/2010 05:34:40 »

Several sentences (including the title) sound awkward to me but English isnt my first language so maybe I'm wrong. The last paragraph sounds exaggerated, unless I missed a lot of action. I'm a researcher myself (in science, but not medical field), and I can tell you that the general feeling is that when you see an exaggeration you immediately start to wonder if any information you just read is reliable.

Also we have to understand that studies take a lot of time. You have to develop a proposal, get it approved by an ethics committee, apply for funding, plan the technicalities, run it, analyze, publish, etc. I know it would be tremendously cool to have an high tech analysis of what goes on and what is happening different for us. But if we go that route, it will take years before we can get something out of it. This is not going to be a priority for governmental funds, and private research wont tell you much until perhaps they come up with a pill and start running trials. I'm gonna try to find whats wrong with me without waiting for that. but still I should say thanks for sending the email, the more we raise awareness the more likely at some point research starts for it. We could end up on an endocrinologist who likes the idea and want to investigate more about it. Its good to have a plan B, if my plan A fails.   
« Last Edit: 29/03/2010 05:56:48 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7160 on: 29/03/2010 06:04:22 »


The last paragraph sounds exaggerated, unless I missed a lot of action. 


Which number(s) are exaggerated? Hmm, If it's the very last paragraph, maybe you're right. Thank you very much for bringing that up, I'll re-consider it on the next letter, maybe stop at "this could save lives" (we have had extremely distraught people here). And we have had some empathy expressed from researchers, but I do see what you're saying, Looking_for, so thanks again!


I'm gonna try to find whats wrong with me without waiting for [proposals, clinical trials, etc.]


Absolutely agreed. That's what I and mostly everyone here has been doing for the last 3 years.


studies take a lot of time. You have to develop a proposal, get it approved by an ethics committee, apply for funding, plan the technicalities, run it, analyze, publish, etc.


NORD (National Organization of Rare Disorders) is willing to take that on for us (see previous posts on NORD). But they want $30,000 minimum, which we don't have.


We could end up [with] an endocrinologist who likes the idea and wants to investigate more about it. Its good to have a plan B, if my plan A fails.   


I thought I had a shot with my endocrinologist, who is senior medical staff and faculty at a major (multi-billion-dollar) medical research university and hospital complex. Alas, no go.

I think we're already on Plan Z ;D
« Last Edit: 29/03/2010 06:25:23 by demografx »
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7161 on: 29/03/2010 08:03:46 »
Looking_for_answ, i like your energy about solving pois, if you can get a prolactin antagonist  and take it before an orgasm, that would be the biggest help in drug experimentation since limejuice and i ran out to our doctors and got progesterone.  i need to let my doctors have a few months off before i push another drug on them.
 

Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7162 on: 29/03/2010 17:31:26 »


NORD (National Organization of Rare Disorders) is willing to take that on for us (see previous posts on NORD). But they want $30,000 minimum, which we don't have.


interesting. ill have to read that post. if its for a high quality study i bet we can find 30 person with 1000$. 1000$ is nothing for a high quality study..
 

Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7163 on: 29/03/2010 17:38:51 »
Looking_for_answ, i like your energy about solving pois, if you can get a prolactin antagonist  and take it before an orgasm, that would be the biggest help in drug experimentation since limejuice and i ran out to our doctors and got progesterone.  i need to let my doctors have a few months off before i push another drug on them.
Vitex is OTC http://www.iherb.com/Chaste-Berry-Vitex [nofollow]
Cabergoline (dostinex) not OTC but one of those substance that people get without a script all the time. There is always online pharmacies in Mexico, India, etc that sell the same products, for cheaper, with no Rx. I used some before, never saw any quality issues. I think the same goes for bromo, but I think carbergoline might be more efficient at reducing prolactin.

besides that, your doctor's job is to get you back to health. If he doesnt know how, his job is to prescribe to you what you tell him. just look on pubmed, find a study that suits you, print it and show it to your doc and say this is what i want. if you know what u r talking about and present a study, he will feel more or less protected and will write you a script. else just change dr

edit: another route we could try (still to reduce prolactin) to see if it helps is to increase dopamine right from the start instead of just after orgasm as i had suggested. most likely less effective than the first plan, but still worth a try. l-tyrosine, niacin and P5P should help. l-DOPA (also OTC) even stronger
« Last Edit: 29/03/2010 20:22:07 by Looking_for_answer »
 

Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7164 on: 29/03/2010 18:47:40 »
Has anyone ever tried Piracetam (a nootropic) for their POIS symptoms?
 

Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7165 on: 29/03/2010 21:53:46 »

would toco-8 be tocopherol aka vitamin E ?

Yes your right.


mister_z, your guess is as good as mine! Unless "anonymous sufferer" comes forward we won't know. But don't worry, mister_z, this is the first time in 2 years since the forum started that this type of anonymous posting has occurred.
 

Hi all,

I report back now after several months of no symptoms of POIS that I have fully cured my POIS by reimbalancing my hormone  and neurotransmitter levels.No more depression, mood swings, headaches/mirgraines/foggy brain/muscle and joints pain, exhaustion, inflammation of the eyes, stomach bloating, indigestion, diaheera, stomach pain & cold,flu like symptoms after an orgasm.

You can check in my last few posts that I said I was getting furthur hormone bloodwork,  saliva and urine neurotransmitter tests done and would take the action necessary to reach optimal hormone levels.

The short version :

Low total+Free/Bio testosterone levels
Low Cortisol & Dhea levels = Adrenal fatigue
Low-Mid range Thyroid (Free T3)
Very High prolactin levels
High Estriol+Estrone levels
High Progesterone levels
Low Dht levels

Very Low Serotonin levels
Very Low Gaba levels

I made a big mistake by going on testosterone cypionate shots but i was lucky I did not completely shut down my HPTA and desensitise my testes Lh signals as I was shooting HCG* E2D to keep the natural production of T from completely shutting down.

I then had to use HCG+HMG/FSH+Toco8 to fully restart natural t production to optimal levels as I did not want to stay on T shots for life.I found that by eating more red meats, eggs and in general more protein and less carbs helped with the restart.It was not a easy process though alot of ups and downs.

I burnt my adrenals out in my late teens by overtraining in boxing and mixing that with overdrinking spirits(straight bottles of vodka, brandy etc) and taking too many stimulants and partying with very little sleep for a few years.I didnt notice the adrenal fatigue till around age 21 in my trip to New York.

Iam using 6mg of Medrol, 5mg Dhea sublingual+15mg dhea cream, Maca, Pantothenic Acid and Vitamin C to heal my adrenals. I also had a period where I would sleep in for 10-12 hours and take naps often in the day.

The cortisol from the medrol is used from the body and that shuts down the bodies own production of cortisol which gives the adrenal glands time to recover.

After starting on Medrol for around 4-6 weeks, I then started
on Armour 1/2 grain and increased 1/4 to 1/2 grain every 2 weeks too 2 grains.

I understand I will need to wean of both Medrol and Armour after 6-24 months depending on the individual.

I had very high prolactin levels which is the cause of crap libido and very slow refractory periods after an orgasm and also can cause headaches/migraines and an overall foggy, drained feeling.

I used Cabaser/Dostinex/Cabergoline(All same drug) to lower to 1/4 of the lower range which is perfect.Now I sometimes use the USP supplement Powerfull when I want to go more than once which has scientifically been proven to reduce prolactin levels and increase testosterone and dopamine levels.

I improved my good to bad estrogen ratio by taking calcium glutarate and Broccoli extract to lower the high estrone and estriol.

The very low serotonin and gaba levels which caused me anxiety, depression, mood swings and often in the past heart palpitations was cured easily by taking gaba and 5htp.

I had to drink a glass of orange juice everytime I took a 5htp tablet to make sure the 5htp would pass the brain barrier and also I found that gaba sublingually was more effective than standard oral tablets.

I was stumped on the high progesterone levels and low dht levels for a while. I looked everywhere on how to lower progesterone directly but the only sources I found proven to lower progesterone was to increase dht levels.

Luckily for me that by increasing my testosterone levels, some of the increased testosterone converted to dihydrotestosterone and then lowered my progesterone levels
 :)

I guess when you sort one thing out it will reach to the rest.

Once my DHT+Test levels were near the top of the range, E2 mid range and Prolactin was within 1/4 of the lower range this is when I feel my best for libido, overall physically feeling a hell of a lot stronger and very confident mentally.

I do still monitor my hormone levels every month or 2 as sometimes I get lazy with supplements and diet or I have a period of eating crap junk food .. lol

oh ... I solved my stomach bloating and indigestion by taking Hydrochloride Betaine, Q-Zyme Digestive Enzyeme blend and primal defense Ultra probiotic formula.

I recommend everyone to have their hormones and neurotransmitter checked either through their local gp/dr or through an independant lab, ZRT, Quest etc

Hormones:

Total+Free/Bio Test, LH+FSH, Estradiol(E2), SHBG, Prolactin, Cortisol(Saliva, morning, noon, evening, night), Dhea, IGF-1, Progetesterone, Dht, Free T3 (Free T4,TSH if possible),

You will know exactly what is wrong and there would be no more second guessing :)

Remember even if you have already had hormone tests done and your doctor says you are fine or normal. It usually isnt the case as they do go by ranges only and not age to range.For example :

A 70 year old male could have a Total testosterone level of

350 with ranges of 250-850

but a 21 yr old could have the same level yet most drs will say you are normal because you are within range.

The dont tell you that 250-350 test level is normal for a 70-80 yr old and the upper range 800+ is normal for a late teenager or early 20s. Obviously we feel the best when our t levels are higher than lower.

A good doc would do furthur tests like E2, Prolactin, Cortisol, Free T3, SHBG and others to check what is causing the low t levels even if it is within "range".

It happened to me and I let it go for years thinking there was nothing wrong with my hormone levels until I started to do my own research and studying many Anti Aging Specialists posts on the anabolic and metaphorsis forums.


I did all my tests at home even the blood tests (just a simple pr.ick of the finger) and did them the morning after an ejaculation. This way it showed me exactly what was going wrong in my body during the symptoms of POIS.

I kind of knew I had low testosterone as I had no drive for life, no libido and felt like sh1t in general and lost a ton of strength and muscle and gained alot of weight in fat.

I also guessed I had adrenal fatigue due to having no energy all day and night dispite sleeping 10-12 hours. I didnt want to speak to people and even had social anxiety due to the crap adrenal fatigue but the good thing is that I have it no more :)

I had no idea about the high prolactin, low DHT, high Progesterone, High estrone & Estriol(Bad estrogens) so it is best to get everything checked as much as possible.

hmmm ... i think thats all for now, any questions please fire away.

Michael




*HCG

Benefits of HCG supplementation:
1. Aesthetic maintenance of testicular size
2. Maintaining activity of testicular Leydig cells - promoting natural testosterone production - preventing primary hypogonadism
3. Improving sex drive greatly (perhaps more so than just with testosterone replacement

HCG acts like LH (Luteinizing Hormone).

LH has several actions, such as:
1. It stimulates testosterone production from the testes
2. It stimulates the production of aromatase enzyme
3. It stimulates the production of Cytochrome P450sc enzyme

Written by a Physician, Psychiatrist, Behavioral Neuroendocrinology, Immunology, and Nutrition = Psychiatry in Dr Romeo B. Mariano.

The above was taking from my posts made several months back.

**** this board logged me out im not rewriting my whole answer, anyway my basic point was good job buddy, your starting hormonal/neurotransmetters profile is very similar to mine right now and i think its probably the case for many people here. you took control, i love it.

If Michael still drops by, how are you now? can you remain well without medication or have you cured permanently? how was your pregnenolone before you start and now? what about your LDL/HDL cholesterol before and after?

the only thing i dont like with that procedure is that it brings you artificially back to an hypothalamic-pituitary-adrenal-gonadotropic axis equilibrium, and I fear that I will not stay at that equilibrium forever if i dont do more. i mean i think there is a reason why we were more prone to develop POIS, and its not genetic. so im trying to fix my hormonal/.. profile as you did, but only using orthomolecular medicine principles, change of diet, exercise, much of the right, high quality OTC supplements to rebalance all minerals, vitamins, amino acids, etc its so much work.  if that hasnt worked within a year or two ill go for the pharma route as you did. but fixing everything artificially is nearly impossible. for example i suspect my bad copper/zinc ratio to also make me prone to ADHD type symptoms. my iodine levels are too low, etc. i think fixing every single thing with medicines is probably possible, but not permanently (ie without some medecines for life).

btw for everyone reading this, pregnenolone is OTC if you want to try. some people claim it stimulate its own production, i dont know if its true
if i was gonna have an orgasm soon i would take vitex for a while before, to see if it helps, but for now i prefer abstinence
ill drop by in a month or so
i suggest we do a wiki page, say pois.pbworks.com where we could document what pathways were experimented with (and with what) in a wiki manner, formally, with links. etc  for for now its likely irrelevant to me cauz im gonna run the program i wrote above first. but i suppose i could modify it along the way if something great comes out of the wiki
« Last Edit: 30/03/2010 08:30:22 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7166 on: 30/03/2010 01:55:14 »
NORD

On Jul 17, 2009, at 11:18 AM, Stefanie Putkowski wrote:


Hi [demo],
 
We do not know of an organization or individual who has the resources to research this specific condition.
 
However--one strong possibility would be for you (and others struggling with POIS) to form a formal patient organization dedicated to raising awareness and raising research funds for this debilitating disorder. As NORD's research program administrator, I can assure you that the researchers are there--they just don't have the funds.
 
NORD can provide guidance to you on forming a patient resource organization.  We have helped countless groups of people suffering from rare disorders to form patient organizations, many of which have taken off with fabulous success!  It can't be done by one person--you would need help from your fellow sufferers. It does not matter if they are overseas or across the USA--all you would need is the will to form a true patient resource group and the ability to use a computer.
 
NORD printed an article on raising funds for research, and published it in our Spring 2008 newsletter.  The three individuals/families who were at the heart of the article had no experience, whatsoever, in forming groups or fundraising.  I can send you that article if you'd like to read it, and you could feel free to forward it to your group.
 
That's just some food for thought--but it is very realistic, I can assure you from our experience here at NORD.
 

Sincerely,

Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7167 on: 30/03/2010 01:59:09 »

The idea above is for us to raise $30,000 by hosting neighborhood barbecues and the like. Difficult, I explained to Stefanie, since this is a sensitive subject, and not something we wish to broadcast about ourselves, e.g., "Come on over to our barbeque so we can ask you for money to help our problems with orgasm."

But I re-printed the email to show you that they are friendly to us. Much more than I can say than ANYONE or any other organization that we have contacted
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7168 on: 30/03/2010 02:50:33 »
i got results back for progesteorne it was .9ng/ml range <1.4ng/ml no starting range
and converted to nmol/l which equaled 2.862nmol/l
looking at dr.dexter's article the in range for progesterone
.7 - 4.3nmol/l.
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7169 on: 30/03/2010 03:12:54 »
my progesterone was high, i am going to do a bunch more tests on Friday.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7170 on: 30/03/2010 03:33:16 »
my progesterone was high, i am going to do a bunch more tests on Friday.

could ldn affect your results..
 

Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7171 on: 30/03/2010 15:00:20 »
Has anyone ever tried Piracetam (a nootropic) for POIS?
 

Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7172 on: 30/03/2010 19:39:22 »
Hello to you all!
My name is Omer, I'm 21 year-old and I'm from Israel. Excuse me if I have some mistakes in English... It's not my primar language.
I have both fibromyalgia an Crohn's Disease, and they both started about 2.5 years ago. It was around that time (or perhaps just a few months later, not sure) that I started to feel more pain -  like my fibromyalgia pain, which is and all-over-the-body pain and itch - but more severely, after masturbating. Today I have absoulutely no doubt that the pain becomes more strong after masturbating. And also, my body is more itchy. About things such as concentration and fatigue - which are also common for people with fibromyalgia, wnd which I also feel - I can't tell for sure if they are worsening after masturbation.
Anyway, it's not a known fibromyalgia symptom (although this feels just like my fibromylagia physical symptoms - just more severe), I started seeing doctors for this just lately. I had only one experience with a drug prescribed to me in order to try and ease my pain: Seroxat (SSRI). The doctor told me to take it about 4 hours before masturbating. I also take, for my fibromyalgia, Cymbalta (SNRI), So at first I took those two drugs almost at the same hour. In the first few times I felt better than I used to feel after masturbating. But after those times, taking the drug had no effect on me (I think it was a time or two after having dissapointment with Seroxat that I stopped taking Cymbalta in the same hour, because usually I take it wround 19:00, and I thought it might have negative effects on my pain when I took it around 13:00 on one day, taking it about 19:00 on the other day). Anyway, as I said, it was after Seroxat begun not-to-work for me. Perhaps the effect of Seroxat was a placebo effect (and anyway, I still had pain after masturbating in those first few times, just a less sever pain than the usual post-masturbating pain), and perhaps the lighter pain in those times was just a coincedence.

Anyway, there are two tests I had in the past (not realted to this issue) that I'd like to share with you, see if you have any insights about them. The first was taken in february 2008:
1) TESTOSTERONE - TOTAL 12.5 nmol/L (usual numbers are 8.4-28.7)
2) FSH - 0.9IU/L (Which is a bit low, because as far as I know the normal is at least 1IU/L)
3) LH - 3.3IU/L (Which is normal, but close to being too low, as LH should be between 1 to 20 IU/L).

A test from September 2008:
1) FSH - 0.8IU/L (Again, low. By the way, this test as well as the one from febuary were taken in the morning).
2) DHEA SULPHATE - 4.42 (Normal, suppose to be between 2.17 to 15.2)
3) CORTISOL-BLOOD - 421nmol/L (Normal, suppose to be between 138nmol/L to 690 nmol/L).

I tell you this because I know one of the medications that did succeed for some of us is testosterone.

I also have my eye on dopamine, and a few days ago I was diagnosed as having adult ADD, so soon I'm suppose to start treatment with Ritalin LA or Concerta - and if I'm not mistaken, they sholuld elevate my dopamine levels, at least temprorarily, so I shell see if that would make me feel better also after orgasm.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7173 on: 30/03/2010 21:17:09 »
on sudden hike of prolactin being the problem.
demographx used to use adderall - which is a potent dopamine stimulator, and he sill has symptoms. This suggest prolactin is not the problem since dopamine and antagonist of prolactin.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7174 on: 30/03/2010 21:19:17 »
Has anyone ever tried Piracetam (a nootropic) for POIS?

no, but it seems has powerfull as using cerebrolysin. Do you think it is something almost all neurologist will know about.
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7174 on: 30/03/2010 21:19:17 »

 

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